Feb 2017 update & more Lemtrada discussion



I recently had an appointment with my neurologist, the first for 2017. I was a little nervous about it as I knew I was getting my MRI results and my JCV status results. I've been diagnosed nearly 2 years now and I'm about 18 months on OMS. I know the disease can take between 3 and 5 years to stabilise on OMS, so getting these results at this stage is still a little nerve racking.

After my last appointment with him I had expressed interest in switching over to Lemtrada as the appointment before that he suggested it as an option that I could transition to. However this time he really put the ball back in my court, he asked me why and told me to go away and think about it some more. So at this appointment Ben and I wanted to discuss it some more in regards to merging from Tysabri, rebound effect, side effects and really just gather more information so I can make the most informed decision. 

My MRI was clear, no new lesions which is such a relief and my JCV was negative so that's also a big relief.

We also had a really good chat about Lemtrada. I expressed my worries about it mainly because of the rebound affect of coming off Tysabri. Knowing that my MS presented highly aggressive and active it's a real concern to me. Going back to square one is just terrifying not to mention risking more damage. But he assured me that if I was to start Lemtrada that we'd start it in enough time to cover the rebound period. Which he said is typically around the 3 month mark and that I really don't need to worry about rebound. That was really comforting to hear.

He also assured me I'd only been on Tysabri a short time, and some of his other patients have been on it for 10 years so there really isn't any urgency to come off it. Although It'd be nice to be free of monthly infusions, he said I'd still need blood work every month for 5 years post Lemtrada treatment. Also the blood tests are run through a special blood service within Australia so going overseas to travel for long periods of time is somewhat restrictive. Alternatively Tysabri can be pushed out to 6 weeks if needs be. 

I was also concerned with the side effects of Lemtrada in terms of what secondary autoimmune diseases are likely and how common it is. He said that 1 in 3 people do get problems with their thyroid but it's minor and manageable. And there's also a much rarer blood clotting disorder that you can get. 

So I then asked him - if I ever became JC positive could I then make the switch? and he said he'd be happy with that decision, he'd recently just done the exact same thing with one of his other patients.

So I walked away feeling so much more informed and decided I would stay on Tysabri for now and if things changed then I'd switch. Lemtrada isn't off the cards, it's still very much my plan B and one I'm feeling a lot better about. But right now while I'm stable, happy and in pretty good health (which has taken nearly 2 years of hard work ) I don't want to ruin a good thing (touch wood!). And the added bonus is it gives me more time on OMS so that when/ if that time comes, my body would have done so much more healing.